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That's hard too, seeing your child go through this. And if he's anything like me, that is weighing on him. The encouragement and the small things are the BIG things, for sure!!

My meaning was a bit understood there... We know in my case due to genomic testing that I have a high PDL1 expression. My immune system is my weak link. What I meant, but am not the great at putting into words, was that my body maybe could not fight of lyme and co-infections as easily as other bodies could, so I don't know if that contributed to me getting lyme disease, a weakened immune system and that could be why it was so difficult for me to fight. My entire body was weakened by all of the treatments, and that could have made it worse for the lyme and co infections because I already had cancer, or it could have contributed to the cancer as well. We do not know and will never know.

Hoping it comes back for you soon! I know how frustrating it is.

Thank you. I'll be armed with demands this time around haha

Thank you for your prayers, and good question! PIPAC is for when you are not a candidate of CRS. Once you have PIPAC, you are no longer a candidate, ever for CRS. There has also been a shortage of the pipac equipment for awhile and the trials were halted. I would possibly consider PIPAC in the future if I reached that point of needing it. So I'm very thankful that at this time, I'm still a surgical candidate, at least unless my specialist changes his mind. If he does so, then I'll pursue other consultations and go from there. For you, or anyone else interested in learning more about PIPAC, PMP Pals has a Physician Presentation available here with Dr. Mustafa Raoof :) pmppals.net/physician-presentations/?vimeography_gallery=4&vimeography_video=760626323

Thank you Therese!

I'll be putting out thoughts and good vibes for you. I hope you are feeling decent at least!

There's nothing wrong with crying, at all. It's hard for me to do, unless I'm alone. My mom is super emotional so of course I have to be the opposite haha. But I just don't have time for it. Too much I want to do. I cherish every day. I make every day a good day, even if it is just a rest day. Sending you love, Paul!

I appreciate that

Thank you so much, Patty!

Keep watching my videos. That anxiety is not something anyone can change. There are a lot of unknowns with this. He needs something to look forward to after, something to recover for; family, and other events/goals, no matter how simple. Tell him he can do this. Tell him you're there for him. Listen to his needs.

It is scary to watch a loved one go through this. I don't know what pancreatic cancer is like, but if she is that frail, please speak with her doctors about possibly putting her on TPN which is liquid IV nutrition. FOLFIRI is tough, but encourage her, enjoy time with her, make her laugh, and tell her she's strong.

Thanks so much

You absolutely are not alone. It's so hard for others to understand us and sometimes hard for us to figure our new bodies out too. I still get frustrated with myself when I'm so tired and can't get much done, but... Clearly my body needs rest. I recommend sharing this video with anyone that gives you a hard time about it. Sometimes hearing it from someone else makes it clear to them.

@@jvoetschthat´s what I did. I shared your video on facebook with a comment of my own. I´ll try to share it also in Instagram, but I don´t know how to do it. Same thing happens to me about the depression I still can´t mannage. Not even my friends understand me. They just think I´m lazy. Sorry if my english is not the best. And thank you so much!!!! ❤

@@leatrumper5574 Your english is great. I'm glad you joined our zoom calls. I need to create an Instagram for this.

No one really knew what chemo was like for me, besides my husband. It was the worst part for me.

Of course. I'm an open book! When I had recurrence, they took a biopsy to make sure and also ran genomic testing. I was matched to Tecentriq immunotherapy. I'm the only appendix cancer patient that I can find that's been on it. Many are on Keytruda. I have a very high PD-L1 expression and that's why this treatment was recommended for me.

@@jvoetsch thankyou for replying to me I was going to ask my team to do the genomic testing on me if it comes back but I haven’t heard if anyone with appendix cancer on immunotherapy that’s why I’m so interested as my team have told me I would be going back on chemo if it comes back and I was so bloody ill on capox so immunotherapy would definitely be a better thing for me, I see your going for another Hipec how long did u get a ned and where did it return in? I hope everything goes well for u I know if I was to go for another I’d be so stressed as the recovery has been so difficult pxxx

@@pauladevaney-wq7iw my disease was extensive and went all the way through the entire diaphragm, all the way across. My specialist cauterized the entire surface after removing what he could there. He went above and beyond for me, and did do HIPEC after CRS. We did expect it to come back on the diaphragm. It did. Also had spread to my liver, but it has not changed. I was never NED, due to the diaphragm, but had no visible disease on scans for 9 months post CRS and HIPEC. That was when we did the biopsy on the spot that appeared in my liver, then genomic testing. Then I did immunotherapy for about a year and a half. I've been on watch for a year now, with no visible changes. I do have a ventral hernia that is causing problems though, so that is why I'm going in for my second CRS and HIPEC. At minimum, my hernia will be repaired and my quality of life will be the most important thing.

@@jvoetsch mines was on my diaphragm to but it hadn’t gone right thru it was at surface level which got scraped off during CRS…..I had a hysterectomy, my peritoneal and omentum removed appendix right side of bowel and part of my rectum removed plus 4lbs of cancer scraped out of the left hand side of my pelvis before the hot chemo…it was brutal as u well know, has the immunotherapy been working for u? How have u found it? Quality of life is definitely number one n I hope n pray you get that with your second Hipec 🙏…il keep following your journey to see how your getting on 💖💖pxxx

@@pauladevaney-wq7iw When I had recurrence, a biopsy was done to the tumor in my liver. It was confirmed appendiceal origin. They used that biopsy tissue to run genomic testing, which put me in a database but also matched me to the specific immunotherapy drug that I am on due to a high PD-L1 expression, vs the typical mutations. 2nd crs and hipec is coming up in April ;)

Hi Paul! Hope you're feeling better each day

I'm so glad that my videos are helping you. I had to do chemo before my first CRS and HIPEC. It did pave the way for that surgery. Chemo prior to CRS and HIPEC is very common for goblet cell and signet ring patients. Take care of yourself during this time.

Thanks James!

Yes, my doctor mentioned possibly chronic fatigue syndrome. Not easy to diagnose though. I have a theory about why I'm going through this, but will cover that in another video ;)

I'm sorry to hear that your mom is dealing with this, and you as her son. Since every single patient is different, all I can tell you is that she absolutely needs a surgical oncologist appendix cancer specialist, and probably a few consultations with different ones, to make sure she feels comfortable with the one she chooses.Do you know what the pathology is yet? LAMN, HAMN, Goblet Cell, Signet Ring, etc? The best places to learn about appendix cancer are acpmp.org and pmppals.net and patients and caregivers must be their own advocates through this, so the more you know, the better!

Just seeing this comment. Kinda new at using YT tools. How are you doing?

@@jvoetsch I’m doing great! Did 12 rounds of chemo, had my colostomy reversed and I am cancer free!! Your video really helped me so thank you!

@@tracyheberlie4831 I love this!!! WOOHOO! Congrats!!!

@@jvoetsch thank you so much!!!

Please make sure you have a surgical oncologist appendix cancer specialist, even if it isn't cancer at this time.

Finding support from other patients is going to be so important for you! I recommend checking out pmppals dot net and joining the zoom call on Saturday or next wednesday. I'm normally on there. You'll get to hear from other patients that understand you and can give you support!!! I hope you have a surgical oncologist appendix cancer specialist. It is imperative, especially with goblet cell. I can help you make sure you have one, or assist in finding one.

@@jvoetsch thank you..for taking the time to respond..truly appreciate it..this is so hard to process…and I hope you are doing good as well ❤

@@cj9667 It took me a few months to process. It is a HUGE thing to deal with. But you can do it. I would not be here without my PALs and others from the community. I am doing great! You're welcome to message me or find me on FB and message there.

I was able to drive anytime I wanted, however my hands were numb from neuropathy, but functional. For me, it seemed like the first 2 days were fine as I was attached to the 5fu pump. Then the day after they disconnected the 5fu, I got really really sick. I work at home/self employed so I'm lucky in that way that I could rest when I needed to... I would recommend taking a whole week off, at least for your fist infusion. As you go along, you will learn how many days your body needs to rest.

@@jvoetsch btw,, what stage you have it and where ? And the chemo is adjuvant or treatment?

@@user-wh8ci8ff9e I was diagnosed at stage IV. First they thought it was ovarian cancer, so I had an open abdominal surgery. They knew it was appendix cancer after they opened me up.but had to proceed to save my life (I could not eat due to size of tumors). During time of healing, I had to do 8 rounds of chemotherapy. 4 rounds of folfox, 4 rounds of folfiri, in hopes that it would clear an organ (the mesentery). It did!work for me as found during laparoscopy. Then I had CRS and HIPEC. Then 2 more rounds of chemotherapy.

@@jvoetsch hopefully you are okay now ,, i can feel how much strong you are

@@user-wh8ci8ff9e I am doing great right now. Living life. I volunteer with PMP PALs and help new patients in the FB groups. I feel that is important to do and is my purpose. It is important to note that it is not possible to be positive through everything. And that is ok. However, it is also necessary to have faith in your survival and future. I focused on what I really wanted to do with my life and spoked about it alot during the tough times. Have something to look forward to. Cry when you need to, but keep going!

Hi Peggy, If you have not already, I recommend finding a surgical oncolgoist appendix cancer specialist. They may be able to treat both at the same time. You still need support. I hope you check out pmp pals and join a call sometime

I'm glad that you found me too and that I'm helping people in any way!!! Are you on the Facebook support groups? Please check out PMPPals.net! We have a zoom call coming up on January 4th and it is for patients and caregivers. It will probably be good for you to join, even if you want to just listen.

That all sounds familiar! I hope that your remaining sessions are not much worse than now. I am living with cancer, but all has been stable for over a year. I'm currently on Tecentriq immunotherapy treatment every 3 weeks. They found this treatment for me via genomic testing from tumor. Stable is fine with me! I feel fine besides fatigue.

You've got this, my friend.